Sunday, April 22, 2012

Life Quality Based On Money?

"Sorry for the delay in responding, we’ve had email access issues.
CSHCS will not cover an ACD.  We only cover medical care and treatment. I would contact local agencies in your area, such as Rotary, Lions, Knights of Columbus, etc.  You could also contact Apple to see if they have a program that would assist you"

I received the above response to my request for help getting my son either an ACD (Assistance Communication Device) or an iPad to help him communicate from his insurance company. OK, I wasn't really surprised but I was still disappointed and it got me thinking. And when I get to thinking you know that I have to type it out. 

As a person there is a simple plan to life. You are a child. You learn as you grow. You become a student. You get a job. You live life as best as you can. You fall in love if you are lucky. You get married (or not.) You have children (or not.) You grow older. 

Along the way, life happens. You may be healthy, wealthy, and wise -or not. You may face this mountain and over come. There are elections, wars, peace time marches, stars that rise and fall, books to read, and job promotions to work for. 

BUT when you are injured, sick or facing a disability who gets to decide on your life and its quality? And if you are a child who has that power? And if you are a poor child with a disability what will your future hold and in who's hands does it fall? 

Here's My Thinking: America is full of programs that are said to help people that are in need. Some American's like that there are safety nets and others think we coddle people too much. I am a balance kind of person. I think we need to help others that want to help themselves and I realize that there are some who abuse the system. I also KNOW that there are some people who are stuck because there are few choices for them. Oh, and those safety nets? The have huge holes in them.

But when it comes to disabled kids, I have a very logical train of thought that seems to be lost on many. It is very, very, very simple math: 

Disabled child + Early interventions + medical, therapeutic, and educational needs met = Highest Possible Function + Ability to work = Less Need for services as an adult = Less cost for Tax Payers

 I don't understand why insurance companies, both private and public, would put up a fuss about paying for services and supplies that may bring the child (or anyone, for that matter) to a higher functioning place.

 If you give a child a voice, then they can communicate, and we can really see what's going on inside their brain. Give a child the brace they need to walk and see how far they run. Why do we have to fight so hard for those little things? Because of money.

Because someone said that a voice for a child should cost thousands of dollars. (see used examples here) Is it the companies, the insurance folks, or what? I don't know or care. My son's braces that will be outgrown in less then a year cost over $2,000. I had to fight to get them. The doctor had to fight to get them. This isn't a luxury item we want but one to help him walk. I'm confused about the priorities of .... everyone... who thinks children shouldn't have that right.

We are under the constant fight to have another 3 months of therapy. I really don't get that one. If a child is becoming a better functioning human than that's good right???? Therapy is a great tool when used consistently.

Money? Is it really all about money? Because if it is then do the math again. Higher function means the child grows into a higher function adult that can do more for themselves and may not need as much or any help from programs that cost other people money. Simple.

If you don't help children when they are young then you risk having to help them in a higher fashion for all of their lives.They may not find work or will always need extra medical care because they didn't get the care as a child. They may cost society more because they end up in jail, homeless shelters, or mental health wards.

Of course there are those who think that if someone is damaged then that falls on their family or better yet they shouldn't have a life at all but I won't waste my keystrokes on them.

Quality life and money? Quality of life is not just "things" but about being able to be the best person that a person can be. It is being as high function as possible, being able to interact with others, it is about being able to find enjoyment in existing. 

Money shouldn't be a qualifying factor on who should be able to reach for the stars but it often is. Money can mean better schooling or none at all. It means we eat or not. It means proper care or not. 

Bottom Line: I want the best for my children. I don't want them to just survive but to reach for the stars with a smile. I don't want our bank account to be the reason they are stuck here on Earth or ... under it. Rowan should have his voice and I don't understand why an insurance company wouldn't want him to have it if it means he can someday stand on his own.

Thoughts? Make sure you read through the comments and respond as you see fit. There is sure to be interesting things there.

Update: An interesting Right view of Lyme Disease and the medical hurdles faced due to money issues can be found here.


  1. Well said. I tweeted, put it up at the A-C page and also on my fb wall. Your post kind of ties in with my latest, because failure to provide medical intervention for diagnosis and treatment of a variety of problems results in the problems becoming more difficult and MORE EXPENSIVE to deal with later and reduces a person's ability to be contributing members of society.
    I'm sorry that it's so hard to get your sweet boy all that he needs to reach his potential. It should not be this way. (((hugs)))

  2. The money problem is if it's public money then the "payers" are already maxes out. Complain to Congress and their high salaries and benefits. Ditto to teachers, government employees. Whats wrong with asking private groups for assistance? Thats what they like to do. I don't see the problem here.

  3. "Whats wrong with asking private groups for assistance?"

    I have. I have also gone to friends and strangers. I also have tried to work for the items he needs. But I think you missed an important point or two.

    1. Insurance should cover certain no brainer things like the leg braces and the shoes that go around them. It shouldn't be so hard to get therapies that not only improve the quality of life but the function and potential advancement of a person.

    2. Private groups aren't really equipped to meet some of the needs and the demand is very high. There is in no way it can go all the way around. If you read through the blog a bit, you will see that I have tried several ways to meet my son's needs and I can only imagine how hard it is for others.

  4. Thank you for passing it around. I'm afraid I haven't made things (my point and the problem) clear enough but maybe it will start things going.

    I know you understand the struggles we all face with the medical community. I also know you understand the potential greatness that can be unlocked if people get the help they need.

  5. I've often had the same thoughts you've expressed here. The lack of common sense among the "powers that be" is the biggest void of all. It's the same mentality in our society that allows criminals to receive all kinds of benefits because they are in prison--when working, honest people have to go without basic needs. It's bassackwards and needs to change.

  6. Also, things like this just shouldn't cost as much as they do - the price inflation that occurs is absolutely ridiculous!

  7. My older son's birth mother was in jail... several times... and got a new set of teeth but I can't even get mine fixed. *eyeroll*

  8. I used to know people who'd get themselves arrested for petty crimes just so they could get their teeth fixed! Got a toothache? Go get caught stealing something. That's what they did.


I welcome your thoughts if they are shared with respect and that you understand that we may not agree but we can still share and exchange ideas.